I am looking for feedback from patients…
What do you think are the best ways information reaches patients regarding modality selection ( ie: home therapy). Please exclude information received from doctors or nurses in the clinic.
Are there any dialysis related publications you read often?
Is there any informational “vessel” you would like to see used to communicate dialysis information?
Any feedback would be greatly appreciated!
The best way seems to be word of mouth from patient to patient however, this is the slowest way.
A great place to deliver dialysis education would be on a site just like this. Start a question and answer board. There was a very good education board at another site. Over 2000 questions were asked by patients! One nurse gave of her time to assist patients with their questions. I have always desired such a board manned by a group of professionals who give accurate responses unhindered by the company line.
I find it strange that with all the dialysis patients in the world the internet sites seems only to attract a very small percentage. I don’t know if patients just aren’t interested or they don’t have access to the internet.
Hi Marty,
Our research with in-center hemo patients found that 25% were getting on-line themselves to look for health information, and another 19% were having a family member or friend look things up for them. Of course, in-center hemo patients tend to be already retired or on disability–so affording a computer is difficult. Folks who are earlier on in CKD may use the Internet more.
I’d like to a huge poster on the walls of every dialysis clinc which says:
“There are 6 kinds of kidney dialysis – 5 of those can be done at home”
Lorelle, That would be an excellent poster. Imagine 5 can be done at home at yet the “overwhelming” majority of patients are stuck at home.
Posters are one of the things we’d like to do this year for Home Dialysis Central, if the sponsorship levels will support it. We’ve had a number of requests for posters, and could use the art we already have for the postcard… But once you print posters, they have to be mailed (in tubes, which are about $2 each w/o the postage). So, we have to be sure we have the resources. It helps a lot to know that the “5 ways…” message is the one you consider useful!
Dori,
If you do the poster with the 5 ways theme, I’d like to know. I’d be willing to buy the poster, pay for the mailing tube and the postage just to have a few to spread around. I’d donate these to some of the centers I know of.
Do you think units would welcome the posters if they do not have a home hemo program and do not desire to have one? It would be great in a unit that wants to get patients in a program.
What research did you do to find out that 25% of patients go online and another 19% have family go online for them to find dialysis info? In every unit I have been in the number of patients who are educated on their txs is extremely small. I have personally spoken to patients about kidney disease and dialysis and they were totally illiterate as to what goes on and had little desire to learn. Most do not have a computer or had never heard of home hemo!
I have thought many times about why the majority of patients are in denial and don’t care to take proper care of themselves. I think a major reason for this is because most patients are not strong in the area of taking medical responsibility for themselves, and then, the whole system fosters dependency.
For patients to jump on the bandwagon for home hemo programs, they have to first have appropriate, stable living conditions and then I would think they would need appropriate expectations and support from the medical ppl.
I previously shared about a unit I heard about that was offering 6x week SDD in-center. Patients who had previously been “no shows” were now scrambling to come to txs 6x a week (twice as often)! Why? Because they felt so much better and could eat and drink more.
To get patients into home programs or in-center daily programs, it would seem that the medical ppl must educate, have higher expectations and be supportive rather than fostering dependency. The current system gets low marks in all of these areas, so it is no wonder it has a captive patient population.
If today a campaign was waged to turn things around to go for quality patient care through opening up home hemo programs, and in-center SDD and SND, dialysis could be revolutionized.
In a general way, you’d do it with monthly newsletters handed out personally to each patient to be done by the social workers.
Also, you’d present educational videos and have all patients watch them while on their dialysis session.
I’ll be dipped just saw a piece on our local news station showing Ryan Stanger using the NxStage. He’s from Mass. and were along way from there wondering who is doing the advertising and why? Maybe NxStage has reached the Buffalo, NY area and I don’t know it.
Was it a video? what’s your local news station called? Have a link?..
NxStage has their own PR representatives from
Schwartz Communications, Inc.
THE PREMIER PR AGENCY FOR TECHNOLOGY & HEALTHCARE
PROSPECT PLACE, 230 THIRD AVENUE
WALTHAM, MA 02451
P 781 684.0770, F 781 684.6500
WWW.SCHWARTZ-PR.COM
They’re selecting NxStage users around and hooking them up with local news agencies. The purpose, to spread the word and let people know about this…
Now would a clinic do the same? Would they show patients videos about NxStage? I think not…
Clinics probably wouldn’t do the same but patients can. When dad started nocturnal I faxed all the news stations and I got one from Buffalo who was interested enough to drive 100 miles to tape and do an interview with dad and I and it was put on. This was 6 years ago. I’ll look for a link for last nights clip.
The website for the news station is www.cbs.com but I didn’t find anything on it with last nights NxStage clip.
Perhaps that what should patients do, try to find a news agency who is interested in doing a report…
Gus writes:
In a general way, you’d do it with monthly newsletters handed out personally to each patient to be done by the social workers.
Also, you’d present educational videos and have all patients watch them while on their dialysis session.
In the units I have been in virtually no education is provided, let alone info about home hemo programs! If the patients don’t know the questions to ask, they don’t get the education. From time to time a little note is given out by the SW or dietitian if it’s something the unit wants patients to know for unit efficiency. But one time, surprisingly, we were given a video to view on our unit tvs by the corporation. The video was very professionally done and extremely educational. I have no doubt that all the patients got the point the corp. wanted us to get with that endeavor. Educational videos are extremely effective tools and can be shown right on the unit patient tvs where the patients are most likely to view the material. So, if there is no education in units, this is a choice on the managements’ part to take the path of leaste resistance or to keep the patients dependent and submissive, because education is very doable and should be required.
The only videos I mostly saw in-center were the rented movies they would put for us to see… hehehe
Rarely, educational videos were put on and if they did it had to do with how dialysis works…
It is easier to get on the radio then you might think. Last summer I called radio statioins in rural Eastern Washington and got on the radio in Moses Lake (1 hour) and in Ellensburg (1/2 hour) - I only called three stations so a 66% success rate.
I was on the radio last Sunday in Seattle - 96.5 JACK FM. It was suppose to be on the Sunday after World Kidney Day but we got bumped from the 12th to the 19th.
Here is a link if you want to hear the radio segment:
http://www.speakeasy.org/~bpeckham/radio/PECKHAM.mp3
it is about a 15mg file.
I did the show with the CEO of NKC - it was meant to be educational - let me know what you think.